Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 Hi Leah, Yes, -Silver Syndrome is rare. It occurs in between 1 in 50,000 to 1 in 100,000 births. That is according to the MAGIC newsletter. Salem could probably tell you better about how to explain it to people. But, I just say that has - Silver Syndrome. That it is a form of dwarfism and they don't gain weight well. That is basically the jist of it, anyway. I am new to all this myself, being that Dr. Harbison recently confirmed the RSS diagnosis in . So, he was 17 months old when we found out for sure that he has RSS. So, I know very little about it, and that is what is so frustrating. There are so many people on here that have so much knowledge about it, and I feel like I want to be that educated. I feel bad because I don't know much and I want to be the best mom to that I can be. But, I just joined MAGIC in September I think it was, and got on this group around that time. So, I am learning more each day, but still have questions on so much. This is the best place to come and ask and learn. Thank God for this group! ) Take care, Jodi R. , RSS 19 months, 13lbs. 13oz. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2004 Report Share Posted August 6, 2004 Leah My sister's daughter has those allergies (not RSS) I'll ask what she uses. Have you found a potato chip brand that she can eat? I know there is one type of chip that my mother always buys at get togethers and they are placed in a separate bowl called " Sam's chips " . That would help. How did it go at the endo's today? Debby Jodie C. and Connie > > Thanks for the tips for school snacks, last year in pre school it > was great since they have snack time for that age group and I'm not > expecting any problems in kindergarten, the problem is finding the > right hi-cal snacks that don't contain any dairy or soy, so the > yogurt, smoothies and most cookies are out, all of the " good " > cookies anyway, she can have a couple of the plain ones but they are > pretty bland and tasteless! > If anyone else has kids with dairy and soy allergies let me know > what you use! > > Leah, mom to and Olivia > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2004 Report Share Posted August 6, 2004 Leah I'm sorry things didn't work well for you at Olivia's appt. It makes some sense to me to have a cut off of 2 years (or whatever they decide) for weighing because then the charts stay consistent, but when you are use to just one method and they suddenly switch on you.........it can be frustrating. I don't know why these professionals can't communicate more.........it wouldn't have killed them any the LAST time they weighed her to say 'well when she hits two we do it with clothes " just so you would be prepared (and like you say dress her in a nightie! LOL......I certainly would make sure that I had her in the least clothes possible next time). My endo here says periactin is totally useless as well. He wouldn't even entertain the thought when I brought it up after being at the conference 3 years ago. Thankfully Adam's weight seems to be fine (even Dr. H. didn't have anything to say about it........too much or too little and he was munching on her vege snacks throughout our visit any way. She seemed pleased to share her food and even stopped what she was doing to get him some dip!). As for the other tests you asked for, I am clueless........since Adam doesn't have those issues I don't pay attention to the fundo's and GET and whatever else it was you said ) I keep forgetting to tell all on the group that Adam is supposed to be having a GI test of some sort in the near future. I asked his ped. (who is a specialist in endo.) what she thought, oh I think it was last year, because he burps horribly loud for such a small body and all the time...........and she told me to get the endo. to request it. So I asked him and he brushed me off with much the same response as you got. Well even if there was a problem, we can't do much about it so what's the point...........RSS kids often have digestion problems, bla bla bla For whatever else was going on in my life at that time (which was probably alot.........the back surgery I think) I let it go. When I had Adam at his ped. just before Chicago (for the phantom ear ache) she was pretty pissed that I hadn't had it tested yet. So she decided SHE would make the referral. She said " who knows he could be filling up fast and not eating as much, we might as well test it out " . I was surprised she was thinking the way we do!!! I think the best thing to do is not give up on your ideas. Sounds like you can get the periactin filled without his help, which is good. Continue to research the other items that concern you, sometimes one slight " symptom " that we don't know about will be the trigger for your doctor to say " oh really? we better check it out then " . As you know, Canada's health care is famous for shuffling most symptoms under the carpet all in the name of saving money. But if you can find the right " button " (ie. a symptom or situation) that will prove how important these things are to Olivia, he may be more willing to go for it. Don't give up and play your regular ped. against the endo as well (if you can). My ped. is obviously a doll and tends to go to bat for the kid even when the parent isn't (she was the one that practically stood on my head demanding Adam get GHT, when I was too scared to even think about it). Write when you can, and write off line if you feel like venting abit. You know I know all about the frustration! Debby Jodie C. and Connie > > > > > > > > > > Thanks for the tips for school snacks, last year in pre school > it > > > was great since they have snack time for that age group and I'm > not > > > expecting any problems in kindergarten, the problem is finding > the > > > right hi-cal snacks that don't contain any dairy or soy, so the > > > yogurt, smoothies and most cookies are out, all of the " good " > > > cookies anyway, she can have a couple of the plain ones but they > are > > > pretty bland and tasteless! > > > If anyone else has kids with dairy and soy allergies let me > know > > > what you use! > > > > > > Leah, mom to and Olivia > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.